Spiritual Journey with the Dying, Liminality, and the Nature of Hope

SPIRITUAL JOURNEY WITH THE DYING, LIMINALITY, AND THE NATURE OF HOPE

Megory Anderson

Lisa had Stage Four ovarian cancer and she had been struggling with it for over two years. The doctors gave her hope, and with aggressive treatment they all thought she could be cured. Lisa was still young, only in her late forties, and her friends and family members encouraged her to fight as hard as she could; this was a battle she could win. Lisa’s friends told her every story they could think of, recounting how someone they knew had beaten the dreadful disease, had gone through horrendous suffering and despair, yet had somehow triumphed in the end. These survivors had returned to normal life, were now baking cookies for their children, running cancer marathons, mentoring other cancer patients, and were stronger than ever before. Lisa and I were in her hospital room where she was on IV’s and a gastric tube, and the vision of standing at the oven and baking cookies for the children did not seem to be in her future. ‘‘I feel as if I am letting everyone down,’’ she confided in me. ‘‘I’ve gone through chemo, I’ve tried alternative medicines, I’ve done guided imagery ’til I just can’t zap those cancer cells one more time. The doctors have that look on their faces. I think I need to get ready to die.’’ I sat quietly, letting her talk this one through. ‘‘People

Downloaded By: [Anderson, Megory] At: 00:24 6 March 2009 from church were just here,’’ she said. ‘‘They anointed me again. We have healing prayer and anointing during services, and when I can’t get to church, a few people come by to give me communion and then they lay hands on me and anoint me. I like it when they do that.’’ She was quiet for a moment. ‘‘I feel as if I’m letting them down. God wants to work His miracle in me, one woman said today. Well, I’m ready and waiting. But what happens if I die? When Susan put oil on my forehead, I felt her deter- mination to make God heal me. But what if there is no miracle? What happens when it comes my time to die and I’m not ready because we’ve been fighting so hard for me to live?’’ The church has prayers and rites for healing of the sick, and it has prayers and rites for the dying and the dead. But what do we offer those who hold both realities in their hands, not knowing which is their way? The Roman Catholic Church’s liturgy for anointing of the sick has chan- ged in practice, especially over the past four decades. It is a wonderfully rich sacrament, now taken out of the specific realm of extreme unction and last

41 Liturgy, 22 (3): 41–47, 2007 Copyright # The Liturgical Conference ISSN: 0458-063X DOI: 10.1080/04580630701274312 rites, and moved into general pastoral care, oftentimes used during Sunday morning worship, with an ease and familiarity that can only be positive. Healing rites have become extremely popular within congregations, and of course in all kinds of pastoral care opportunities. Oil is used in the ritual, often with individualized prayers for a wide array of differing situations. Healing is a generic enough term so that it covers virtually all manner of requests for prayer and laying on of hands. Despite the sacramental nature of anointing and the call for ordained persons to administer this rite, I have seen an overall laitization of the practice. It has become a very interactive form of ritual. Clearly, the focus on healing ministry as something we all need, wherever we are in our lives, creates a new paradigm for ritual and liturgical occasion. It opens up a widespread range of experiences and opportunities for touching people in the deepest and most essential ways. Anointing, nevertheless, is still widely associated among the faithful with care for the dying. The ‘‘last rites,’’ regardless of new designations, are asked for time and again, and not only by those Roman Catholics who are of an age to remember when they were essential for a good and holy death. The two sides of anointing have given rise to an interesting dilemma. Rather than address the huge scope of this rite in recent years, and the popularization of its use and efficacy, I would like to offer another dynamic within the mix, the use of prayer, anointing, and spiritual presence in the liminal state, as we help prepare someone for death.

The Liminal Experience

David A. Hogue wrote an excellent article in a recent issue of Liturgy (21, no. 1) entitled, ‘‘Whose Rite is it, Anyway? Liminality and the Work of the Christian Funeral.’’ Hogue writes, ‘‘Liminality describes the period of separation human beings undergo before, during, and after major life or social transitions; it helps explain the sense of ‘time out of time’ or ‘betwixt and between’ that human beings commonly experience between leaving one 1 Downloaded By: [Anderson, Megory] At: 00:24 6 March 2009 status in life and moving into a new one.’’ Hogue perceives the funeral ritual as affecting both the surviving loved ones in their bereavement, but also the ritual state of the person who has died. He suggests that we have lost sight of the fact that the funeral is the final rite that carries the soul through the liminal space into the afterlife. We, as the living community, and also as church, must assist in this task. I would like to take this premise of the recognition of that liminal space and intention, and back it up to the person who is ill and facing death. Liminal work begins long before the funeral. In my work with the dying I see it continuously. The liminal experience of preparing to die is a profound one, and not easily understood or entered into by the pastoral caregiver or liturgist; it tends to be very fluid. It is, in its most recognizable—and penultimate—stage, referred to clinically as ‘‘active dying.’’ Active dying occurs during those hours and sometimes days when the body begins to shut down and the soul is preparing itself for its journey. I call this time the ‘‘in-between’’ space—where the soul wanders in and out of the body, with one part in the here and now, and the other part very clearly moving towards the afterlife. The dying often

42 have visions, or conversations with people who are not tangibly present in the room. Health care practitioners and loved ones who have witnessed this know exactly what the phenomenon is and highly respect it. It is an extraordi- nary window into that liminal place. For the pastoral care worker, it has traditionally been easy to distinguish between a person who is ill, even terminally ill, and one who is actively dying. Prayers and rituals tend to be different for different stages of illness. Judaism is particularly good in distinguishing between visits to the sick, bikkur holim, and keeping watch with the dying person, the gossess. When one visits the sick, prayers and rituals focus on shlaymut, or wholeness. But when death approaches, both the ritual intention and the wording shifts. It is time to pray this person through death. In the Hebrew prayer of confession, the Viddui, the person who is gravely ill recites, ‘‘May it be Your will that You heal me completely, but if I die, may my death be an atonement ...’’2 Death is brought into the open and is dealt with by the person dying as well as those who are sitting in prayer. Both have respon- sibilities and parameters. Currently, in many Christian communities, the anointing of the sick involves prayers that ask God to restore healing and wholeness to the person, focusing on God’s blessing and the hoped-for outcome of healing and resto- ration. And those prayers, of course, can be used under many circumstances. ‘‘I lay my hands upon you [and anoint you] in the name of the Father, and of the Son, and of the Holy Spirit, praying that our Savior Jesus Christ will sus- tain you, drive away sickness of body and mind and spirit ...’’3 Prayers for the dying are much more traditional ones from the historical viaticum, asking God that ‘‘when the hour comes for us to pass from this life and join him, he strengthens us with this food for our journey and comforts us by this pledge of our resurrection.’’4

Either=Or

Downloaded By: [Anderson, Megory] At: 00:24 6 March 2009 When the sacrament of extreme unction shifted its focus to praying for healing, I believe it brought with it that ‘‘fight the good fight’’ mentality. This shift juxtaposed healing with dying. You can either have healing or you can surrender to death. For many churches, healing prayer and anointing have become regular parts of the congregation’s primary worship services. Many take advantage of the rite on a regular basis and find comfort in the prayers and ritual. But when it comes time to examine the journey into death, when healing has not been perceptibly effective, there is a profound spiritual chal- lenge. If the use of prayer and anointing has not been for a good and proper cure, then what is it? In our prayers and rites for the sick, it appears that we may have unintentionally mirrored the medical model of getting locked into an either=or situation. Either one heals or dies. When people become ill, they often turn to the medical community to fix the problem. There are huge arrays of medical and technological treatments available which put the patient in the position of always fighting the disease. The expected outcome is a longer life, regardless of its quality or level of suffering. We must ‘‘fight the good fight.’’ Death is the enemy.

43 The Reality of Managed Death

There is a growing phenomenon in the medical field that has created new challenges for those who minister to the sick and dying. This phenomenon is the ‘‘managed death.’’ Under this model, deaths are often drawn out and are handled in dialogue with teams of people within a medical setting. One of the conversations within medicine and technology is one of extended treatment. If we are indeed treating this (fill in the blank) disease, then how shall we approach the minor infection that has occurred? Or shall we go ahead and do the surgery to relieve some of the pressure? It will make the patient a bit more comfortable for now. When the physicians know that death is virtually imminent, how much should they treat illness, knowing that the families usually want and need to do ‘‘something’’? Sharon Kaufman, a medical anthropologist at the University of California, San Francisco, has written magnificently on the managed death in ...And a time to die: How American Hospitals Shape the End of Life. ‘‘Death today is medically and politically malleable and open to endless negotiation.’’5 She continues,

Struggling to find ways to either stave off death or arrange for ‘‘good’’ deaths, hospital staff, together with the powerful technologies that are part of hospitals today, can also allow a third possibility—a prolonged hovering at the threshold between life and death. Instead of death, the hospital opens up an indefinite period of waiting during which patients do not cross that threshold until it is decided when it is time for them to die. Scenarios of patients being maintained at the threshold, and of dilemmas that arise there about what to do and when, are common.6

Sam and his siblings saw this when their father was dying. ‘‘He was in and out of the hospital so many times, we just didn’t know what to think or how to make decisions about his declining health. It was always, ‘Well, we can treat this one thing.’ And of course the family said, ‘Yes, go ahead and treat that one thing.’ What they didn’t really tell us was that Dad was dying, and

Downloaded By: [Anderson, Megory] At: 00:24 6 March 2009 all the hospital was doing was putting Band-Aids on him. We would have approached this totally differently if we knew he was going to die. We were blindsided.’’ There was no time, in the hospital plans or in the expectations of the family, for preparing for death. As in spiritual approaches to healing, anointing has become a strong sym- bol of the power of God’s healing abilities. ‘‘If God is truly God, and I am doing all the right things, then I should be cured.’’ All the physical, emotional, and spiritual energy is put into gaining health. This societal and religious polariza- tion has left us with a huge gap that is not easily filled from a medical, spiritual, or liturgical perspective. It is very difficult to make the shift from hopefulness and ‘‘fighting the good fight’’ to the mindset that tells us that we need to prepare ourselves for death. It may not be this day, but it is going to be sooner rather than later. What tools are there to help us with that process? As most hospice workers can tell you, the realization that death is imminent comes too late for most. For example, a man I knew had been in and out of the hospital for months. He had wasted away to nothing, yet every small infection was being treated, and he would not even talk about the possibility

44 that he was close to death. Then one morning he woke up and began sobbing uncontrollably. ‘‘My God, I’m going to die! How can this be happening to me?’’ And indeed he did die not very many days later. We said prayers, we anointed him, and we tried to be present with him, but he faced death incredibly afraid and terribly overwhelmed. The reality is that when we are gravely ill, we most often live in a liminal stage, where death is what we face. Our spiritual task then is to maintain someone’s hope of healing and wholeness, while at the same time, preparing her to meet death face to face. If the medical community cannot easily break free of this last-minute approach to facing death, the spiritual community must take over the work.

Spiritual Unreadiness

Our spiritual and liturgical responses tend to reflect the reality of how our society treats illness, death, and dying: that is to say, not very well. However much we insist that the answers are within our liturgies, theolo- gies, and rituals, people tell us that not only are spiritual needs paramount at the end of life, but as a rule those needs are not being met.7 In 1997 a survey by the George H. Gallup International Institute found that attention to spiritual needs is extremely important at the end of life. These needs include making amends with family and loved ones and the divine, coming to terms with judgment and the afterlife, and in having a spiritual confidant to discuss things with. Ironically, most defined that confidant as a friend or loved one, as opposed to a pastoral counselor, clergy, or medical caregiver.8 Since Christianity is rooted in the resurrection story, it tends to be easier for Christian caregivers to proclaim the ultimate hope that we will not die, but that we shall all be saved. Our liturgies hold out the hope of eternal life, and for the modern person, that hope is unfortunately heard as ‘‘I won’t really have to die.’’ When religion and medicine join together to tell us that

Downloaded By: [Anderson, Megory] At: 00:24 6 March 2009 we can be restored and fixed—the ‘‘I don’t have to die’’ mentality—we are often left with little from our spiritual communities to take back and honor the dying experience. So how do we come face to face personally with the dying process? How do we live in the liminal space, which must acknowl- edge hope in the healing power of God while also acknowledging the reality of death? For some reason, as Christians, moving into death is a very difficult meta- phor, much less a concrete spiritual practice. Buddhist practice is much more realistic when contemplating the letting go of life. Many Westerners are look- ing to Buddhist teachers and to Buddhist texts, such as the Tibetan Book of the Dead, for wisdom in this arena. If we examine the fact that people want and need spiritual guidance at the time of death, that they feel the churches and pastoral caregivers are not providing it successfully, and that rituals do not address their very clear and specific needs, then perhaps it is time to revisit what Christian ritual can do for the dying. In my own work with the dying, I know that we must hold out hope for healing and wellness (with prayers, laying on of hands, and anointing that

45 move into the reality of all forms of healing); and we must adequately prepare for death, with all that means, emotionally, physically, and spiritually. We must hold in our hands both realities: that all of us want to be made whole and well again; and that all of us must die, and to die we must be ready. Hold- ing both of those realities begs for a way to be present in that liminal stage.

Being Present

One of the challenges of the pastoral caregiver is that death is not as neat and clear-cut as one might expect. For most people, unaccustomed to how people die in this age of the biomedical and technological standards, we tend to have notions of typical illnesses and deaths. There is the ‘‘He had a heart attack and died instantly’’ story. There is the ‘‘She has had Alzheimer’s for years now, and it is such a blessing that she finally went in her sleep’’ story. There is the ‘‘She has been battling with cancer, and sadly, she lost the fight.’’ Or, ‘‘It happened so quickly. One minute he was fine, the next day he went into the hospital, and we just got the call that he died.’’ These scenarios all happen. As do the tragic deaths: the deaths in war, deaths by accidents that ‘‘aren’t supposed to happen this way.’’ As both pastoral caregiver and as the one who offers rituals and liturgy in different moments along the continuum, here are some suggestions: 1. That the church community, large or small, be present during times of tran- sition. This is the work of the body of Christ. Be present in a real form. Teach others to be present.9 Sitting vigil with the dying means holding space and intention for however long it takes. 2. Recognize that at different points along the continuum there are different spiritual needs. Prayers for strength and courage while receiving medical treatment may move quickly into understanding that death may be around the corner. Help the patient learn how to make that shift. Use biblical examples of oil being used for transitions to a new state of being. 3. Create rituals that help the person dying begin to let go. Downloaded By: [Anderson, Megory] At: 00:24 6 March 2009 4. If the dying person is in the hospital, and the dying process seems ‘‘managed,’’ help shift the family or care team’s need to extend the liminal space longer and longer. Palliative care or hospice is a good option, but it often requires a change in thinking and treatment plans. Hold up the image of time to prepare for what is unfolding. 5. Help change the mindset of ‘‘Either=Or’’ to ‘‘Both=And.’’ There is always a vision of hope for wholeness in Christ, and we must do our own specific work to prepare for the dying experience. Dying is a journey; it is part of a continuum. In the mystery of our life in Christ we must learn to embrace and to let go. It is part of the gift we have been given.

Megory Anderson is the founder and executive director of the Sacred Dying Foundation in San Francisco, California. She is the author of numerous books and articles on pastoral care of the dying.

46 Notes 1. David A. Hogue, ‘‘Whose Rite is it, Anyway? Liminality and the Work of the Christian Funeral,’’ Liturgy, 21, no. 1: 4 2. From the shorter version of the Vidui. There are excellent books within the Jewish tradition describ- ing prayers and rituals during the time of illness, death, and mourning. See Anita Diamant, Saying Kaddish (New York: Schocken, 1998); Rabbi Chaim Binyamin Goldberg, Mourning in Halachah (Brooklyn, NY: Mesorah Publications, 1991); Anne Brener, Mourning and Mitzvah (Woodstock, VT: Jewish Lights Publishing, 1993). 3. From Enriching our Worship 2 : Ministry with the Sick or Dying, Burial of a Child (New York: Church Publishing, 2000). 4. From Pastoral Care of the Sick (Washington, DC: National Conference of Catholic Bishops, 1982). 5. ...And a time to die: How American Hospitals Shape the End of Life (New York: Scribner=A Lisa Drew Book, 2005), 3. 6. Ibid., 4. 7. See Rachel Stanworth, Recognizing Spiritual Needs in People Who are Dying (New York: Oxford University Press, 2004). 8. George H. Gallup International Institute, Spiritual Beliefs and the Dying Process: A Report on a National Survey. Conducted for the Nathan Cummings Foundation and the Fetzer Institute, 1997. 9. See Megory Anderson, Attending the Dying (New York: Morehouse Publishing, 2005). Downloaded By: [Anderson, Megory] At: 00:24 6 March 2009